A year has passed since Amy Lansky stepped down as director of the Office of National AIDS Policy (ONAP), and the position continues to remain open, worrying HIV/AIDS advocates.
Sitting on the Domestic Policy Council, the ONAP director provides advice to the president on matters related to HIV/AIDS domestically and abroad. They serve as the chief spokesperson and policy director on all topics related to HIV/AIDS.
“Here in the [United States], you have well over 1.2 million people living with the disease. Why would you not want someone in that position, especially considering the progress that has been made?” said Brandon Macsata, CEO, ADAP Advocacy Association, in an interview with The American Journal of Managed Care®
The ADAP Advocacy Association has called
on newly appointed HHS Secretary Alex Azar to lead the push for the appointment of an ONAP director. Recognizing that the director is not appointed by the HHS secretary, Macsata explained that they tapped Azar to advocate for an ONAP director because he reportedly has the ear of President Trump and potentially has the influence to bring attention to the vacancy.
“To me, sitting here without a compass or a map, it really sends the wrong message for those living with HIV, especially with the progress that’s been made under the last couple of administrations. There’s the fear of taking steps backwards,” said Macsata.
Under the last administration, Jeff Crowley was appointed as director of ONAP by President Barack Obama. Shortly after coming into the role, there was concern that, while there was success in the international work being done by the President's Emergency Plan for AIDS Relief (PEPFAR), there was no domestic strategy in place. After hosting community discussions across the country and taking into consideration public opinion, Crowley and Obama launched a 5-year national strategy, spanning from 2010 to 2015. In 2015, the plan was updated and expanded until 2020.
Before the Obama administration, HIV rates had been stable for about 15 years, with approximately 50,000 new infections each year, according to Crowley. However, CDC published
data in 2016 showing that new infections declined by almost 20% from 2008 to 2014, indicating significant progress.
“I think the concern now about the lack of an ONAP is that this administration is poised to make major progress as long as we keep the trajectory going, but we need to keep seeing the leadership necessary to make things happen and keeping a focus on the indicators that were developed in the national strategy as far as tracking how many people are diagnosed and how many people are getting into care,” said Crowley in an interview with AJMC®
. “ONAP is really in the center of national policy and is responsible for coordinating a government-wide response to the epidemic.”
Crowley underscored the importance of having someone in the White House on the Domestic Policy Council who voices the priority areas that need to be addressed. Crowley did note that the national strategy is still in place, and agencies agree with the evidence behind it, so those efforts will continue; however, what’s missing is someone to highlight new and emerging issues and take initiative to address them.
When Scott Evertz was appointed as ONAP director in 2001 by President George W. Bush, he set a focus on protecting and defending domestic funding while beginning to develop international funding.
“I viewed my role, in part, as defending a lot of organizations that did good work throughout the country,” said Evertz in an interview with AJMC®
. “That’s the thing I’m quite proud of having done. But beyond just the snippets that appeared in the press about my going there and saying, ‘I think this program should get funding,’ there was all this stuff going on behind the scenes, including working with a number of members of congress and the administration to make sure that they continued to get their funds.”
Having a seat at the table, the ONAP director serves as a designated person to talk about funding for programs for people living with HIV/AIDS, said Evertz. While serving as ONAP director, Evertz and the domestic policy council met twice a week, also providing an opportunity to bring up pressing issues on HIV/AIDS matters and making sure these issues were heard.
In absence of an ONAP director, the responsibilities that come with the role now fall on the advisor for health policy, Katy French Tolento, who sits on the Domestic Policy Council. Evertz also noted that the work others put in every day for the fight against HIV/AIDS should not be discounted. He said: “Whether there’s a Presidential Advisory Council on HIV/AIDS (PACHA) or ONAP director, thousands of people get up every morning and go work on this issue at CDC, National Institutes of Health (NIH), and other offices in HHS.”
In January, the Trump administration dismissed
the remaining members of PACHA and accepted nominations for individuals for the 2018 council. The revamping of PACHA is not unique to the Trump administration, as the Obama administration dismissed the George W. Bush administration's appointees.